This topic is very central to treating cancer, but that doesn’t make it easy. It’s not one that I think is taught in medical school, but rather one that is learned over the course of directly caring for patients over time. It’s incredibly complex because doctors have remarkably different styles in their approach, and even the same doctor may work very differently with different patients. For something that is so integral to the practice of oncology, the topic of how and when do we get to a point that further anti-cancer treatment isn’t advised is a murky mess.
There are several major factors in this discussion. First, patients and their circle of family and friends have their own preferences and predispositions. Some patients come to their oncologist saying that there’s no way that they’re going to take chemotherapy, others say that they want everything possible and that they never want to stop trying, while others have more of a middle ground and express a deep concern for their quality of life along with our efforts to prolong survival. Of course these preferences infuse our mindset.
Second, physicians have their own philosophies. I have worked directly with physicians who are averse to treating beyond a point where there is an established benefit for treatment, while others are committed to treating patients to the point that their patients and family members worry about hurting the feelings of the doctor by expressing ambivalence or a complete desire to stop treatment. Some transition to hospice readily, while others rarely initiate a discussion of hospice until their patient is barely able to participate in the conversation.
In all of this, the goals of treatment are important. If the goal of treatment is cure, and that’s a feasible possibility, this tends to trump many other concerns, and we’re often inclined to accept a significant risk of short term toxicity, and even real danger, for the potential prize of a cure on the other side of the tunnel. But most of the time when there’s a major question about how to proceed, it’s because cure is no longer a goal we can realistically focus on. For oncologists, significant improvement in overall survival is generally considered the leading factor we’d prioritize, though the other side of the coin is the tolerability of the treatment. An improvement in survival that amounts to just a few weeks is harder to justify if it significantly compromises a patient’s quality of life, but even a very modest benefit may well be “worth it” if it’s anticipated that the risk of feeling poorly is very low.
In the gray zone are endpoints like response rate and progression-free survival. We are happy to see tumors shrink and/or have the cancer remain stable for longer, but if patients don’t live longer and experience side effects from the treatment, it’s hard to be very enthusiastic if the only benefit is one you need to show a patient on a scan.
Improving cancer-related symptoms is a very appropriate goal of therapy, even if it’s not associated with a survival benefit. Just as survival benefit needs to be be considered alongside the toxicity of the treatment, an improvement in quality of life can be a sufficient goal of treatment even without prolonging survival. Over the last few years, I’ve also come to sense that for some patients, not being on treatment is a very unpleasant, anxiety-producing symptom that can potentially be alleviated by the hope provided by ongoing therapy.
Putting this all together, a strictly data-driven oncologist very skeptical about the value of any further treatment might well recommend only the proven, evidence-based standards of care (or be pessimistic enough to recommend even less than that). In some medical systems, this is the approach that is enforced because only the evidence-based standard treatments will be offered.
On the other end of the extreme are the oncologists who are optimistic enough or so disinclined to ever “give up” that there is always another treatment available for a conscious patient, and sometimes options for those who are comatose. There is almost never a decision of when to stop treating if a patient can find their way into the clinic or be admitted to the hospital.
Between those two perspectives (neither of which is rare), there is a very wide continuum in which the oncologist is inclined to consider and very likely offer treatments that are unproven but might be helpful. The decision of when to continue with more anti-cancer treatment vs. transition to a focus on symptom management and quality of life is the product of the combination of the possibility of benefit from unproven drug X, the probability of it causing side effects that will worsen quality of life, and the patient’s desire for more treatment. We also have our own biases, such as feeling a compulsion to treat younger patients extremely aggressively. The problem with both the reflexive temptation to over-treat younger patients, or anyone who desperately want the most aggressive treatment we can imagine, is that the biology of a cancer doesn’t care about these factors and can’t be completely ignored. These situations are often among the hardest we face, since a deep desire for more treatment doesn’t make a later therapy more likely to help or less likely to be toxic.
Given that both doctors and patients have their own philosophies about these issues, I think it’s appropriate that oncologists bend with the needs of their patients, and I know that patients often need to adjust their expectations based on what their oncologist recommends. But even with some flexibility on both sides, incompatibilities do emerge: no oncologist is the right fit for everyone, and I’ve had a few patients leave my practice to seek an oncologist with a nearly inexhaustible list of possibilities. There are certainly oncologists who have a large panel of patients who eventually find them after being treated by other oncologists who advised against more treatment, while the patient is not ready to consider that.
My general approach, with some lattitude based on the patient I’m working with, is to be very eager to recommend treatments that have an established benefit and to be very agreeable about continuing with less proven treatments that have a good rationale and are unlikely to be prohibitively toxic, as long as a patient has a good enough performance status to continue with treatment. My personal threshold to favor a transition to a focus exclusively on symptom management and comfort is when I think it’s clearly more likely that additional treatment is going to harm a patient than to help them. If a patient is debilitated enough, we do eventually reach a point when further treatment would have a greater chance of worsening survival than improving it. I do accept the idea that relieving the anxiety of being off of treatment can represent an improvement in quality of life, but that in itself can’t justify harming a patient with the physical side effects of unhelpful treatment.
All of this said, there is no question that different oncologists have different philosophies that are not wrong and may be a better match for some patients. However, it’s important to bear in mind that across the US, oncologists are very, very late in recommending hospice to patients, probably in large part because it is a difficult conversation for any of us to have. While hospice is most likely to help patients and family members who have the opportunity to develop a rapport and relationship with the hospice team, it’s typical for patients to be referred to hospice mere days before they die — an opportunity for better help lost.
I welcome people’s questions and comments on this difficult and very personal issue.